[lactationlady]

I have just discovered this board and wanted to introduce myself and ask a few questions.

I am the mom of 3 great kids - ds6, dd3 and dd5.5mo. My littlest one was recently given a tentative diagnosis of Kabuki Syndrome. (For more info, see here: http://www.kabukisyndrome.com/kabuki.html ) The symptoms she displays so far are slow weight gain (she weighs in at just about 12lbs now) and low muscle tone. What we are likely to see develop as she gets older are feeding difficulties and sensory integration issues, as well as lowered immune system function, speech delays and possible hearing loss. Right now she is exclusively breastfed and is doing amazingly well compared to other infants with this syndrome. She doesn't show normal hunger cues and her suck is "abnormal" and not particularly strong but we nurses frequently and we co-sleep so that she takes in a good amount over-all.

My question is when to start solids. She is so tiny now and has the demeanor of a 3mo old so I can't imagine trying to give her solids at this point. My original plan was just to wait until she showed signs of wanting solids, as with my other 2 kids, but it seems that may be hard to read. With her low tone, she doesn't really reach for/grab things, so she may not be trying to grab food off my plate. She may not sit before 12 months and with her poor tongue movement, she may not be an eager eater. So how do you know when to start? If she is likely to have sensory issues is it better to start sooner with little bits on a finger to get her used to tastes textures or is it still okay to wait? Right now she is steady on her weight gain at ~4oz per week, but if she slows down, there may be more pressure to begin solids.

Thanks for any info you care to share.

Mellanie

 

[Individuation]

I checked out the link you posted. There's not much there about starting solids, unfortunately, but my educated guess would be that a very very very slow introduction would be best... maybe even starting to try and feed breastmilk with the spoon you'd use for solids? Then transitioning to breastmilk with a little, tiny bit of pureed food mixed in, and so forth?

With sensory issues, I don't know that it would be best to introduce a whole new method of eating AND a whole new type of food at the same time. The transition to spoon-feeding would give you something to start now, so that you could get an idea of what kind of problems you were likely to run into when you introduce solids in earnest.